Coronavirus: Dismissed by doctors, sufferers of 'long COVID' still struggle for recognition

While recovery from COVID-19 is often relatively quick and painless, for up to one in three cases the road is much harder - with life-altering symptoms persisting for weeks or even months. 

Sufferers of long COVID, sometimes called 'long-haulers', experience lingering symptoms ranging from brain fog to fatigue and heart palpitations. And to make matters worse, many people - including medical professionals - still don't even believe long COVID is real.

Coronavirus: Dismissed by doctors, sufferers of 'long COVID' still struggle for recognition

Now to prove its existence scientifically, a New Zealand-led study is taking a deep dive into Kiwis' immune systems. One of the participants is Geoff Muliaga Brown, who first contracted COVID as part of the Marist College cluster in April 2020.

He isolated himself in his bathroom to protect his family and ended up in hospital, going public about his experience afterwards. Brown was discharged but says he has never recovered. 

Ever since there's been fatigue, brain fog and recently something more serious.

"I thought I was the only one,'' he told Newshub Nation. 

"I didn't even share the information with my own family, you just go day by day and I noticed things happening internally and I needed to find those answers. I ended up in hospital three weeks ago with a heart scare."

It's these frightening unknowns that prompted Auckland University immunologist Anna Brooks to start investigating long COVID. She currently runs a Facebook group for long-haulers with more than 300 members.

"There are all these crazy symptoms going on and we just don't understand why," she said. 

"It's absolutely a grey area still but more and more studies are edging up to [concluding that] one in three are going to have these symptoms for even three to six months."

An even bigger grey area is - why them?

"We know when this virus hits the body it is causing a multi-system disruption and we don't understand what is going on, why it's going on and more importantly how we can treat that moving forward."

Another Kiwi long-hauler, 31-year-old Luke MacLean-McMahon, is also taking part in Dr Brooks' research. MacLean-McMahon was living in London last year and having the time of his life when he fell sick. 

Ever since life's been a battle, with multiple symptoms from chronic fatigue to persistent gut issues. 

"It's been a huge challenge, I used to view myself as sort of relatively young and healthy, and I don't anymore," he told Newshub Nation. 

"COVID has completely changed my life. I used to take my health for granted and now I live every day with ongoing issues."

And when he finally returned home to the safety of MIQ, his heart stopped. He was rushed to hospital where he recovered, but the cause remains a mystery. 

Now he's put himself forward for Dr Brooks' trial and for this story to raise awareness. He's concerned New Zealand's low case numbers mean long COVID isn't taken seriously, and it's something Dr Brooks hears frequently from her group.

"Overwhelmingly most people are dismissed, overwhelmingly. So family members dismiss them, their colleagues, their doctors," she said. 

"You would think that getting a lot more awareness of long COVID but as recently as the weekend I was speaking to someone who had been to a doctor who said 'there is no long COVID' in New Zealand. So that dismissal, we call it 'medical gaslighting."

It helps their cause the World Health Organization has just released a clinical case definition for long COVID stating: "It usually starts 3 months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained and has symptoms like fatigue, shortness of breath, cognitive dysfunction and more - impacting on everyday life."

It also helps that Director-General of Health Ashely Bloomfield called long COVID 'real' during a 1pm press conference last month. And it might become real for more New Zealanders as Delta cases spike.

Which makes Dr Brooks' study timely, but getting funding has been a grind. Together with high-profile long COVID advocate Janene Crossan, Dr Brooks raised $60,000 through crowdfunding along with help from the Associated New Zealand Myalgic Encephalomyelitis Society. But they need at least $500,000 to see the research through. 

The Ministry of Health says it's not aware of any specific long COVID studies but has committed $1.2 million to a longitudinal study about the physical, economic and psychological impacts of COVID-19 and that will include people with long COVID.

But Dr Brooks' study specifically investigates why some people's immune systems recover quickly from COVID and others do not. Until more funding is approved, Dr Brooks says she only has enough money to start asking these questions but not yet enough to answer them. 

"We have got seed funding to get people through the door so we can get their samples stored so we can uncover and do the discovery work to unearth what is going on."

For those suffering, there is no treatment in sight. They can only deal with it day by day.

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